How to raise a kid with a heart condition
How to raise a kid with a heart condition
What did your parents do right? What might they have done differently?
Hello! I’m Leigh Kamping-Carder, and this is The Heart Dialogues, the newsletter for people born with heart conditions (and the people who love them). Every other week, I bring you a candid conversation with someone who has congenital heart disease, plus occasional essays, links, recommendations and other good stuff about living with a wonky heart. Add your email to join this community and ensure you don’t miss the next edition.
Welcome to a bonus edition of The Heart Dialogues. In a recent essay, I talked about how my family rarely mentioned my heart stuff while I was growing up.
A reader wrote to me with the following question:
"My 7-year-old son was also born with tricuspid atresia. I often wonder what he thinks about his heart condition. We treat him 'normally,' but he knows his heart is different given that we see his cardiologist twice a year, all of his meds, and two scary arrhythmias recently. I would love to know, if you could have changed anything about the way your parents parented you while growing up, what would it be? Did you like that they never spoke about your 'heart'? Did you wish they told you more? Sometimes I worry that I am doing the wrong thing." —Britt Melsheimer, Connecticut
This was a tough one to answer, but it got me thinking... My parents did the best they could with a difficult and scary situation. In many ways, I appreciated that they didn't treat me differently, didn't make a big deal of my heart stuff, and didn't make me feel like I was a sick child. I never knew any limitations.
At the same time, thinking back on it now, I wish I’d been able to talk more openly about my experiences. Sometimes it felt like my heart complications only existed for me. If I mentioned them to other people, I assumed I would burden them or freak them out (or both!). I grew up with an amorphous feeling of shame about my health and body.
Today, there are a few things that would have been helpful for me:
I would have appreciated more talk about my heart in a normal, everyday way, maybe even talking about it as strong or special.
I wish that my parents, especially my mom, had had more resources, from mental healthcare to Google (which, of course, didn’t exist in the 1980s and 1990s).
I would have benefitted from more of a community. I didn't meet another person with CHD until I was in my mid-30s. Back when I was a kid, there were no Facebook groups or Zoom meetups or, ahem, Substacks, but I wish I would have had some of that as a kid—just knowing I wasn't alone, I wasn't some kind of misshapen unicorn with scars.
My parents, especially my mom, did a loving, devoted and careful job raising me. My mom was at every appointment, she taught me to be an advocate for my own health, and she made damn sure that I knew about my own medical history. I’m lucky that she was so involved in my care when I was younger (even if we sometimes drove each other crazy!).
Today, there are so many more places to get information, advice and connection, from the Adult Congenital Heart Association nonprofit to Reddit’s r/chd subreddit to the “Heart to Heart With Anna” podcast. But there is no right way to raise a kid with complex medical issues, and I’m sure Britt isn’t the only parent with questions.
So, as we approach Mother’s Day, I want to know:
What would you tell a parent who’s raising a child with a heart condition today? What did your parents do right? What might they have done differently? How are they involved in your care now?
Tap that comment button to leave a note directly on this post, or hit reply to this email to reach me directly. I hope to include responses in a forthcoming edition of the newsletter (but I’ll get permission first if I plan to publish your comment).
I am 62yrs old and diagnosed at a very young age. Maybe by 3 months of age. My parents did a lot of things right for them to be as young as they were when I was born.
My mom and my dad talked freely about my heart condition to me. They explained it in terms that I could understand and as I got older my mom explained the diagnosis and the procedures that were done.
My parents never discussed death with my heart condition. They would always prepare me for any procedure like a cardiac cath or for my final heart repair surgery at age 13yrs. The thought of death never entered my mind. Going in for cardiac caths became routine for me. I always went home from the hospital.
My mom was always with me for my yearly check ups. My mom explained to me why I couldn’t exert myself. I did feel alienated in elementary school when I was not aloud to do the exercises everyone else was doing at the beginning of recess.
I wish my parents would have had the resources and the support that is out there now. Parents need to be aware of what living with CHD does to a person mentally and how they may feel lonely at times. I am just now realizing the effect it has had on me mentally and why I learned to be ok with being alone. To this day sometimes I just want to be aloner.
My mom was my advocate at school. She made sure that there was a letter from the cardiologist filed in the school office regarding my limitations due to my heart condition and that the principal was aware of. When I was in the third grade we would go out for recess and everyone had to run around the backstop in the field before they could play. A teacher that was not my teacher told me to go run. I told her I couldn’t because I had a heart condition. She told again to go run and I told her again I couldn’t because I have a heart condition. She told me to go run a third time, so I did. When my mom came to pick me up from school that day I didn’t have to tell her what happened she could tell already just by looking at me. She asked me, “what happened at school today?” So I told her. She turned right around and and went to the principals office and gave him a piece of her mind. She probably was a little overprotective but sometimes she had to be.
My two sisters I am sure they felt neglected during my open heart surgery in 1974. I was in the hospital for a month. My mom was at the hospital everyday until I went home. Of course back then the pediatric hospital had strict visiting hours and no child could visit. That made it really hard. Hospitals today are more lenient regarding visitors so, don’t leave siblings out of the process. Educate the siblings along with the child with CHD.
I am 62 years old and was diagnosed with CHD when I was 3. One of my earliest memories is being in the hospital for a catheterization and how scary it was to be away from my parents, I was 3 at the time. Those were the "dark ages" because I had to be put in a hypothermic state for the procedure, so I was packed in ice. To this day, I don't tolerate cold well. I went on the have surgeries at 11, 14 and 45.
What did my parents do right? I think my parents were very open and forthright with me regarding my treatment and associated risks. They were very supportive, loving and understanding of my fears. I don't feel like they ever sugar-coated anything. They encouraged me to ask questions of my doctors and to learn and understand as much as possible about my condition. They taught me to be a strong advocate for myself.
What could my parents have done differently? While they encouraged me to do the things I liked doing, I felt that they were overprotective and that I didn't really get to spread my wings until I was in my 20's. When I told them I was going hiking and camping for the first time, they tried to talk me out of it, I was 24. I did it, had to prove to them and myself that I could. I have a younger sister and I feel like she was short-changed a bit when we were growing up. I was always more doted on by my parents and protected and I think that hurt my sister. To this day, I believe there is still some underlying resentment. Parents, make sure that your other kids are not feeling left out. The one thing I really wish my folks would have done is to have me see a therapist after my first surgery. Facing your mortality at 11 isn't easy, and there wasn't really anyone I could talk to that about. We were not a religious family, so I didn't have that avenue. I think talking with someone would have been very beneficial, I needed to express my feelings to someone outside of the family. Many years later I was diagnosed with PTSD and my dad actually apologized for not finding someone for me to talk to early on.
At the current time, I keep my mom (my dad passed in 2007) apprised of my situation if there are any changes and, I know, she will be there to support me if I need her.
All this said, my parents did the best they could given the circumstances and the times. They were young parents and were forced to grow up quickly due to my condition. Hindsight is 20-20 and, I'm sure, if they had to do things over again, they might handle things differently. And, on last thing I would say is, this is a lifelong journey. You need to prepare for that and give your kid the best tools you can so they can make the best decisions for themselves going forward in their lives. Don't be afraid to question and get second opinions.